Update, Scan Results and More Updates – June 12, 2019

Lots and lots of updates on little Miss Emma! A lot has happened since I last updated here. I am sorry for that, but the end of the school year and our crazy life got the best of me!

First, Emma is doing great and has had a big few weeks. She ended May by celebrating her 7th birthday on May 24th. Seven…I don’t know how that can be, but we are beyond thankful to be celebrating #7 with her. She of course wanted a donut party and had a great time. It is hard to believe that of those 7 years she has been fighting this awful disease for 6½ of them. When I think about that I reminded of just how strong and resilient (and maybe sassy) our little girl is. Emma also was excited to finish first grade. Emma had a great year in first grade and made so much great progress. We are so thankful for her team at Walnut Creek that pushes her, but also takes such great care of her. Emma is now very excited to tell you she is a big 2nd grader! We are also very happy to finally be on summer break at our house and have a chance to spend more time together enjoying summer.

When I last updated, Emma had just had a MRI in Omaha in March and it had shown growth. At that time we were still waiting and hoping the trial in Boston would open. We found out shortly after her scan that the trial drug had been sold to a different drug company and now there was no real clear idea of when the trial may be open again. Because her tumor had grown we could no longer wait for the trial unfortunately. Then began about 3-4 weeks of discussions and phones calls back and forth between Boston and Omaha and trying to decide what would be then next best treatment for Emma. It took awhile and was a bit of a frustrating process, but we eventually decided to try a oral antigenic treatment made up of 4 oral drugs (5 pills a day). We had talked about this treatment several times in the past, but since Emma couldn’t swallow pills then, it was one we had never pursued. Since Emma can now swallow pills, and the fact that the doctors felt the side effects she would experience would be manageable we decided to give it a try.  It took another 2-3 weeks to get drugs ordered and jump through all of those hoops, but by the beginning of May we had all the meds and were ready to start.

On May 3rd we started the new chemotherapy treatment. It consists of Emma taking 3 pills in the morning (Fenofibrate, Celebrex, Cyclophosphamide), 1 at dinner (Celebrex), and 1 at bedtime (Thalidamide). So far Emma has tolerated it very well. She is a little more tired than when she is off treatment, but doesn’t feel sick and can still do the things she enjoys and needs to do each day. We had one week where her ANC got low, but it came back up and otherwise her blood counts have been good too.

It seems crazy, but it is already time for scans again, so we are in Boston this week for a big round of appointments and scans. We started this week with neuropsych testing. This is just something do routinely as part of the brain tumor program and Emma hadn’t done it for two years, so we started the week there. She did 3-4 hours of testing on both Monday and Tuesday. The doctor said she worked very hard, so we are proud of her for that. We will do a phone conference in a few weeks to get all of the results.  We also had endocrinology and dermatology appointments this week. Everything looked good at endocrinology. We don’t need to adjust meds, and they were happy to see she had gained back some of the weight she had lost on the previous treatment. She still hasn’t grown a lot height wise, but we will continue to watch that. Overall, dermatology thought Emma looked good. She has had some psoriasis issues recently, but they gave us some new ideas to try. We also did a “try it” MRI on Monday where Emma tried to do her MRI without sedation. The kids can watch a movie while they are in the MRI, so we thought we would give it a try. Emma did really well the first 20-25 minutes, but then some of the sounds changed and she got really scared and started crying so we weren’t able to do the entire scan. If you have never had an MRI done, they are very, very loud, which made Emma really nervous. Since she couldn’t finish the scan Monday, we went back today and did a MRI with sedation so that they could get good images. Everything today was running super behind, so it was a very long day of waiting. We finally saw Dr. Chi at about 5:15 this afternoon. She said that Emma’s MRI showed some more minimal growth. While it is only slight growth, we were still a bit disheartened. Because Emma’s last scan was done in mid-March that means that half of the time since the last scan she was off of treatment and that she has only been on treatment for about 5½ weeks. She felt that was not enough time to definitively decide if this new treatment is working or not because that growth could have happened before we started treatment. The plan now is to continue with this treatment and scan again at the end of August and see how things look. We will then be able to decided if the treatment is helping to keep things stable or not. She had also recently heard that a child at Duke had applied to the drug company that has the trial drug for compassionate use, meaning they would manufacture and give the trial drug to child because of their current situation. Dr. Chi suggested that she would like to apply Emma for compassionate use for the trial drug as well since we have no idea when it will be ready to go as a real trial again. This process can take several months, and she felt it was worth a try because the worst they can say is no. If they say no then we wait until it is trial again and hope timing works out. If they say yes, then if her scans in August show growth again we could use it at that time. We told her we were fine with her trying, but we will just wait and see what happens there. Right now we are focusing our prayers and energy on the treatment she is on working! We also saw neurology today, and Dr. Ullrich was happy to see that Emma had regained so much strength since January. We still have an ophthalmology appointment tomorrow, but after that we are done for the week and will be ready to head home. While the news today wasn’t’ great, it wasn’t awful either. We are thankful that at least we can continue what we are doing and we don’t have to make any decisions on treatment changes.

And the last of the updates is that the 6th annual EmmaStrong Drive for a Cure is quickly approaching. The last month has been a bit of a blur so we haven’t been great about getting information out this year. This year’s Drive for a Cure will be June 29th at Eagle Hills Golf Course in Papillion with a shotgun start at 1:00. We will also have dinner and silent auction to follow. So many people and businesses have blessed us with amazing support over the years with this event. We are so very thankful for the support of our title sponsor Union Bank and Trust of Columbus and our dinner sponsor Hy-Vee of Papillion. We are also honored that Midwest Medical has offered to bring their helicopter to do another golf ball drop to kick off the tournament. We are also thankful to the many groups who have signed up to play and our other business and child sponsors.

Since we are little behind in getting things together this year, please know that there are still opportunities to help, donate or get involved. We still have open spots for golf teams, and we would love to have you join us for the tournament. We also still have opportunities available for businesses to sponsor a hole and for people to sponsor a child who is fighting or who has fought a brain tumor. We also continue to take donations for the silent auction. We are still working on finalizing details with Midwest Medical for the golf ball drop, but once that is taken care of we will have opportunities to purchase golf balls to win a cash prize. We also are still in need of volunteers to help on the course and with the meal the day of the tournament. We are trying something new this year and have moved all of the registration and sponsorship options to an online system in an attempt to streamline things. If you are interested in registering or helping in any of the ways discussed above please visit: https://tms.golfstatus.com/event/2019-6-8dcad8-6th-annual-emmastrong-drive-for-a-cure-golf-tournament/details/registration-details

Help us raise some money to find a cure pediatric brain tumors. Emma and all of the other kids fighting this disease is why we do this event. We want to do everything we can to make a difference for these kids! Thank you for joining us in this fight!

Thank you to everyone for all of your continued prayers and support. Days like today never seem to get easier, but thank you to everyone for the messages, prayers and support.  We will continue to pray that the treatment Emma is on is working and that when we scan next time the results show that. Thank you for always being EmmaStrong with us!

Last Day of 1st Grade